Policies on Thalassemia across the world.
India is the Thalassemia capital of the world with 40 million carriers and over 1, 00,000 patients.
But still there is no prevention and control programme at the national level. NGO’s and other private sector have taken the initiative to provide better health care. The National Policy on Thalassemia just gives benefits to the people who are suffering from Thalassemia but there is no action taken to prevent its spread. The only way to cure Thalassemia is bone marrow transplant. But in India, patients can neither afford it nor do they have relevant matches with siblings or others. Bone Marrow Transplant can be done only for children up to the age of 10, after that it becomes risky for the patients. This treatment is very expensive in India and government should take necessary step regarding this. In India there is no norm of regular health check-ups due to which people suffer Thalassemia and unknowingly pass the genetic disorder to their children. So it is necessary to spread the awareness of Thalassemia across India through the government by taking certain measures such as compulsory carrier testing before marriage and educating young adult groups.
Middle East Countries
Many countries have developed policies to in the Mediterranean area, the Middle Eastern and North African region (MENA), show a high prevalence of Thalassemia major and carrier populations due to a consanguineous marriage tradition. A consanguineous marriage is one where two individuals who are related as second cousins get married to each other.
Among the countries in MENA region, UAE has taken tremendous effort to raise public awareness and identify the Thalassemia carrier population. In 2008, the UAE government launched a nationwide campaign to promote premarital screening. Since 2012, premarital screening has been mandatory for all about-to-marry couples. Premarital screening offers a non-directive genetic counselling to at-risk couples. At-risk couples who are carrier-carrier couples receive information about the risk of having a Thalassemia child. Today, the number of affected births has been almost halved compared to the time when these policies were not in place.
Cyprus
When we talk about Cyprus regarding prevention of Thalassemia it has been operating a programme since 1973. The programme consists of public education, population screening, genetic counselling, and antenatal diagnosis. Carrier screening is mandatory and certificate of Thalassemia screening is required before marriage. This is a very important step as the number of Thalassemia cases has gone down drastically after this policy came into picture. At one time Cyprus had the most number of Thalassemia cases in the world. But now, Cyprus is almost free from Thalassemia.
Sardinia
Sardinia is the unique example for successful Thalassemia prevention. In Sardinia declination of birth rate of Thalassemia major from 1:250 live birth to 1:1660 has been reported in 2009 with an effective prevention of 85% of cases. This was only possible because the government took strict measures to ensure that people underwent pre-marriage and prenatal screening. Also, a lot of awareness programs were conducted which further enhanced the knowledge of people about Thalassemia and in turn helped them in effectively preventing it.
Bangladesh
In Bangladesh, its capital Dhaka has a Dhaka Shishu (Children) Hospital, where they have a complete Thalassemia centre providing integrated facilities including Thalassemia diagnosis, treatment, counselling, carrier screening, and prenatal diagnosis. Even though the country has limited resources and is a developing country, the capital is improving in health facilities.
Some other government hospitals and organizations have started providing services to Thalassemia patients and also to create awareness about this disorder.
India
Many countries have taken measures to prevent Thalassemia in their own way. India has also taken measures which have helped to create awareness to some extent. Thalassemia International Federation played a major role by deputing and supporting experts to come to India, and give lectures and conduct workshops on Thalassemia. The booklets outlining the optimal care of Thalassemia have also been very useful in educating the patients and doctors.
In 1996, Thalassemia society was formed. It was formally registered in 2000. Since then the Jammu and Kashmir Government is providing blood transfusions, chelation and other therapies free of cost to 174 patients and also provides free transport to all patients who have to travel from long distances to receive treatment.
This was followed by Delhi where Thalassemia units were formed in 2005. The Punjab Government gives free treatment to all Thalassemia children who attend school. The Governments of Gujarat and Maharashtra also provide free therapies for children with Thalassemia. Right now, similar societies exist in other states too. However, due to lack of government policies regarding Thalassemia, it is difficult for these organizations to function efficiently.
We just hope that the Thalassemia societies in other states exert pressure on Government to provide similar services. We can say that Thalassemia will be manageable only when it is prevented. Prevention would not only be a good public health practice but it will also be cost effective when compared to the cost of treatment.
The Government of India should take measures now before it is too late. Premarital Screening, Genetic Counselling, Extended family screening, Prenatal Diagnosis and Carrier Detection are some of the measures which can help prevent Thalassemia in India. Right now, there are Thalassemia units in major cities of India which provide Thalassemia treatment but it is necessary to make people aware of this disease so that the future generation is not affected by this disorder.
Author: Roopali Sudra, Intern